Article Text

Download PDFPDF

P-80 Transition in reality: end of life care for an adolescent with huntington’s in an adult hospice
  1. Damien McMullan1,2,
  2. Yvonne Martin1,
  3. Conn Haughey2,
  4. Heather McCluggage2,
  5. Paul McIvor1 and
  6. Neil Corrigan2
  1. 1Foyle Hospice, Derry-Londonderry, UK
  2. 2Western Health and Social Care Trust, Derry-Londonderry, UK


Background A 17 year old with juvenile onset Huntington’s chorea was admitted to an adult hospice in Northern Ireland for symptom management and possible end of life care. The patient had been known to adult palliative care services in the?local hospital for approximately 10 months while under the care of the paediatric team and GP. The potential need for hospice admission for end of life care was recognised, but the nearest children’s hospice was far away and so admission to the local adult hospice was explored and facilitated.

Aim To provide the adolescent patient and family with local hospice care.

Methods A timebound, patient-named application for variation of age registration was successful with the Regulation and Quality Improvement Authority. The admission was planned collaboratively between paediatric and adult palliative care services. This joint-working continued following admission to the adult hospice.

Outcome The initial move to the adult hospice presented challenges including recognition of dying in an adolescent; the patient’s limited communication and distressing symptoms; adjustment of family to a different care setting; staff anxieties with looking after a dying adolescent. Symptoms were more controlled and the patient died, with family there, almost two weeks following admission.

Conclusion Flexibility by adult hospices regarding age restriction can help dying adolescents and their families to have access to inpatient hospice services when children’s hospices are far away. This may become more relevant as patient numbers increase (Together for Short Lives, 2015). Good communication and collaborative working by paediatric and adult palliative care services are crucial in overcoming the challenges, easing staff anxiety and in maintaining the young person at the centre.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.